Adalimubab - update: Well. It’s been four months since... - NRAS

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Adalimubab - update

TheMarfs profile image
26 Replies

Well. It’s been four months since they decided I could try biologics. Finally got the post blood tests go ahead on Christmas Eve….and still I wait.

This feels like a ridiculous saga at this point. The blood tests couldn’t all be done in the same hospital. Did anyone tell me this? No. The adalimubab is supplied by a third party and apparently i need a nurse to show me how to inject it…so just waiting for the call to arrange that. This morning I have both shoulders screaming at me (washing my hair was so fun today) and my right hand is stiff as per usual. I wake up feeling like the Tin Man, and it definitely wakes me up in the night. I feel tired and knackered and pissed off.

My husband’s cousin works for GSK and used to work for Pfizer, so i was talking to her about it this weekend (apparently her eldest child’s boyfriend’s Dad invented Adalimubab(!!) so maybe I should talk to him. Ha!) but she’s also of the opinion that everyone should be put on Biologics asap to limit the damage RA does. I’m three years post diagnosis and I don’t feel like anything i have been prescribed has helped massively…*sigh* !! Anyway, I’m offloading to you lot, because I know you’ll understand xxx

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TheMarfs profile image
TheMarfs
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26 Replies
Deeb1764 profile image
Deeb1764

Timelines sometimes just do our heads in. I know probably done but have you called and chased hard? I know the first time with biologics it took about 6 weeks but no Christmas in the middle of it. The problem with RA medications some of us have to go thro and awful lot of them to find the ONE, they throw at us the medications and pray they will work, its a game of tag for ra consultants and us and of course time and its all a vicious circle.

TheMarfs profile image
TheMarfs in reply toDeeb1764

Yeah. And bearing in mind a delay can result in further damage it seems like they’re trying to keep themselves in a job hahaha

Numptybrain profile image
Numptybrain in reply toDeeb1764

I think I’m in the same situation. I too was told I’ll be getting infusions before Christmas and all they needed was another CT scan of my lungs to see how the inflammation is, I had the scan 2 weeks later yet my next rheumatology appointment isn’t till April! I’m struggling with breathlessness and pain as I’m now only on steroids as MMF failed.

Take care

Wendy xx

OSTEOARTHRITISRA profile image
OSTEOARTHRITISRA

Contact pals and make a complaint It's unacceptable, happening all over the place ,once you Contact pals ,you will be seen promptly,

4 months and still waiting is diabolical

Madmusiclover profile image
Madmusiclover in reply toOSTEOARTHRITISRA

Better than Leicester. Sadly.

TheMarfs profile image
TheMarfs in reply toOSTEOARTHRITISRA

I havent even considered that! I will do. I did leave a helpline VM yesterday basically listening which bits of me hurt! 🤣

Madmusiclover profile image
Madmusiclover

I hear you. Took me 5 years to get to a biologic. Which didn’t work. Then a JAK which did, for a year or two. Tin man! Perfect analogy. Everything crossed for you. Xx

TheMarfs profile image
TheMarfs in reply toMadmusiclover

Thank you! I’ll have to cross my fingers but on my left hand, haha!

Sunshinereturns profile image
Sunshinereturns

I am so sorry reading this. This sounds so awful. It took four months between the decision to give me it and actually getting it. It changed things from the first injection. I am having lots of trials and tribulations along the way - but life is better than before. Hope it comes soon for you.

TheMarfs profile image
TheMarfs in reply toSunshinereturns

Thank you! I’m so pleased you are doing so much better, even if it’s not wholly smooth sailing(!) (what is with this stupid condition?!)

AgedCrone profile image
AgedCrone

Just sit back & thank your lucky stars you are getting Biologics so soon in the 21st century.

Previously many of us took much longer…personally I waited 16 years & I was fortunate it was the right Bio for me. So as I said be patient…I know the nhs is very disorganised right now..but you will get there.

TheMarfs profile image
TheMarfs in reply toAgedCrone

Whilst I appreciate your perspective, I am being patient. I really appreciate this space as a place to come & have a bit of a grumble when I’m feeling low about it, confident in the knowledge that there’s a modicum of understanding and empathy from others who are, or who have been, in a similar situation.

I am fully aware of how fortunate I am, and grateful for the access I have to drugs and support, but sometimes that gets overshadowed by pain and exhaustion.

Jojoboz profile image
Jojoboz in reply toTheMarfs

I feel like our lives are parallel. It's been 3 years of hell and I too have had the go ahead for biological, the chest xray, the bloods, the letter, I have sent my approval and yet nothing. They say patience is a virtue. After 3 years of daily chronic pain. I would say patience is now my super power! I hope you get your meds soon MARFs

TheMarfs profile image
TheMarfs in reply toJojoboz

So sorry to hear you’re in the same position. I hope you get yours, too! Mxx ps I woke up early because my hands and right knee were painful(!!!) Another fun day ahead….i did get a missed call yesterday from the RA helpline though (but you can’t ever call them back?!)

wilbertjellyfish profile image
wilbertjellyfish

Really hope the adiludimab helps.

Akaka profile image
Akaka

Hi, I had pretty much the same experience tried all the smarts and combinations before going on a biologic. The wait between getting the bloods done, getting them delivered, the hospital getting the funding and a home visit by Sciensus on how to inject them took nearly 3 months. I feel your frustration as I felt the same. I was put on hyrimoz and although it helped my hands after6 months I was no better. I hope it works for you, the great thing was no side effects, I’m crossing my fingers for you..

Kati66 profile image
Kati66

Hi Marfs

I’m waiting to start this biologic too. Had my blood tests done but they cocked up the ESR so now waiting to have that done. It’s a small world that you have a relative who is connected to the guy that invented it!! It’s so frustrating that when you are diagnosed you have to wait for treatment to work. Like you, I don’t feel like the dmards I’m on are making a massive difference. My recent bloods were backing up my thoughts, which is why they are putting me on a biologic now. Hope you get the call soon from the meds provider. I was told they do the appointment to show how to inject over FaceTime.

Kati

TheMarfs profile image
TheMarfs in reply toKati66

Thanks Kati. Here’s hoping it helps us both when we get it! M x

Lex54 profile image
Lex54

I've been on the usual meds Methotrexate. Sulfasalazine and Hydroxychloriquine for about 10 plus years. Don't want to move to biological meds. Have the odd flare up when stressed or ill but overall ok! Have been told biological meds the next step. Have needed a Kenalog injection (steroid) in my buttocks a few times but not for a while since taking all three. Only take Paracetamol and Ibuprofen daily with Folic acid, VitD and Vi K2.

I'm 66 and try to keep moving in one way or another. Still working. 🤞keeps working!

PFTT profile image
PFTT in reply toLex54

I have tried Biologic for only 6 months and caused me acute chronic colitis which made me drop 2 stone so very underweight now and still having problems 15 months on

Back on hydroxychloroquine as methotrexate didn’t agree with me either. Salfasalazine may be an option for me. How have you found it and do you take it on its own?

TheMarfs profile image
TheMarfs in reply toPFTT

I have had no real side effects from Sulfasalazine. If just doesnt do enough! I take five of them per day plus hydroxychloroquine…

Sorry you have had such horrible experiences so far.

Otto11 profile image
Otto11

Hi sorry you’re struggling & most of us can relate to your situation. I think it’s worse that we are so grateful to get the go ahead & your brain thinks at last but then it dosnt happen for what ever reason. The wait seems endless. My first Biologic was Etanercept & on screening my bloods came back positive for latent TB. That meant 6 months of triple therapy antibiotics before I could start. It was awful. You will get there & hopefully it will be the one for you. I was on the original for 12 years & it was the best one I’ve tried. You could try the Consultant’s secretary or your Rheumy Nurses. Tell them how much you’re struggling. Good luck 🤞

aliplayspiano profile image
aliplayspiano

It was a similar time scale for me 7 years ago. It was about 4 months between being told I would be put forward for biologics and actually having the first injection! It wasn’t the best of times but I got through it! When things seemed to have ground to a halt, a friend who is a nurse suggested I rang the consultant’s secretary. She wasn’t in the office but fortuitously the lady who answered the phone was sat at the next desk to the biologics coordinator for the hospital. Once she got the facts things moved much faster! It took several weeks for the biologic to kick in but it’s still working well today with just the odd flare.

Happy5 profile image
Happy5

On same route as you but all went smoothly taken third dose of biologic. I had a video call 23/12/2024 with the specialist nurse from the company supplying my meds. Took an hour but was fine.

I'd suggest you contact your RA team so they can collate your blood results, look at your chest x-ray (if you had one) then they can contact the company to sort your meds. My checks were done end of October 2024, not contacted till week before Christmas.

Hope it's sorted soon.

CagneysMum profile image
CagneysMum

Feel your pain and frustration!

I have a friend whose an RA consulting nurse who also believes all RA sufferers should be on biologics early on to limit damage 👍 Adalimumab has been a life changer/saver for me over the last 3 years and I hope it works well for you to 👍

flowerlover profile image
flowerlover

There was a delay between my ok & the phone call to arrange the nurse's visit.It turned out to be simply the telephone number given to Sciensus was wrong. Just check it's not that.

Adalimumab has been good for me

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